New to this

Hello,

I’ll mainly be reading but want you to know that your help ideas and advice are being taken onboard. My partner is due to go in for AML chemo soon and we are both scared. He feels fine and can’t understand why this is happening. I feel helpless. We are trying to be positive. He’s hoping that it’s been caught early. Is that a thing?  Just don’t how it’s going to pan out and struggling to take one day at a time. X

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. I am glad that you have found the ongoing posts in the group helpful, there is nothing better than talking with folks who have the T shirt.

    I don’t have AML but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I, like many in these groups understand the challenges of this journey well.

    Chemotherapy is a necessary evil in blood cancer but the developments in these treatments combined with the other treatments that go with them have come on amazingly over my 23 years.

    It is crazy that you can be feeling well but inside there is war going on and if it’s not stopped there could be significant fall out so intervention is important…… trust in his medical team as they do do this day out day in,

    I had over 750hrs of chemo during my initial treatment and actually did ok although this was only a steppingstone for going into Stem Cell Transplant (hit my community name for my story)

    Let’s look for some of the AML group to pick up on your post. 

    For good information do check out Leukaemia Care UK who produce very good information and various support platforms including their Buddy Scheme where you partner can be connected up with someone who has walked the walk.

    Always around to help more or just to chat ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Thank you for your words x

  • Hi My husband also has AML. A year ago we were going through what you are going through now, so if theres anything I can help you with just ask. Is your partner having inpatient or out patient chemo? My husband had his first round of chemo as an inpatient, but has been having outpatient chemo since. I know what a nightmare it all is. You really want to something to help, but you feel its all out of your hands. Its been a bit of a rollercoaster, with times when things are going relatively smoothly, and other times when things happen and you feel like you are going backwards! Just remember to look after yourself too. People worry about the person who is ill, but sometimes forget their partners need support too. 

  • Thank you. We have been told he will be in for chemo up to 4 cycles with 3-4 weeks between. He may be allowed home for a day or night depending on how ill he is. That’s quite scary as we don’t know when he will be back home. We are back in tomorrow to ask more questions although I’m not sure the dr will be able to answer them. X

  • Ask them all the questions you need to. All the drs we have spoken to, in 3 different hospitals, have been pretty good at keeping us informed. They can't answer everything, as everyone is different and reacts to treatment differently, but because they are specialists in the area of blood cancers they will have some ideas of where and how things are going. Let us know how you get on, and if I can help with anything just ask. 

  • It's the oddest thing, to appear as if nothing wrong yet have this unbelievably significant illness 

    I too have AML 

    Treatment Changes according to how I react to the last meds. Stey flexible, positive and ready to adopt

    Best wishes 

  • Hello Minnie Mouse 123

    about six weeks ago I asked for

    advice about managing seven day chemo

    as an out patient.

    yyou took.    the trouble to give

    me lots of info and practical tips.

    Ihad a first seven days of chemo

    in hospital,( I am 77 so only non-intensive

    suitable)

    I had a second bone marrow biopsy a few 

    days after going home, and continued 

    with weekly blood counts.four weeks 

    ago I was told there was no improvement 

    in bone marrow, chemo hadn’t worked,

    no point continuing, advised palliative care.

    after five blood count results everything

    has improved, I now start chemo on Monday! !

    I am wondering if anyone else has had similar

    experience?

    seems I am back in  the group,

  • This journey is a scary roller coaster isn't it. I'm so glad you could go back onto the chemo. It seems odd that they decided to stop it after only one round of injections, so its good you are back on them now. My husbands was stopped after 8 months as his blood counts were low, we speak to the Dr next week to see what's next. Good luck for your next round. Let us know how you get on, and if theres anything I can help you with. 

  • Hello, I hope by now you have had some positive news about

    your husbands treatment. I have just finished 7 days of

    chemo. Due to have bone marrow biopsy in 10 days.

    seems to depend on that result before decision to continue.

    reading other peoples experience I realise that feeling

    reasonably well is no indication of AML progress.

    have you as a couple found any counselling or

    alternatives treatment that has been of help?

    thanks for keeping in touch, I’ve used two tubes of

    Arnica so far !

  • Hi Sakchi, good to know your treatment is underway again. Good luck with your next bone marrow. My husband isn't having any treatment at the moment. they are giving him a break as it was making his blood counts low. His last bone marrow showed a very low level of AML. So really we are just waiting and seeing how things go. They will review him in a few weeks and we can contact them any time if there are any problems. We haven't looked into any counselling or alternative treatments at the moment. Have you? Have you got family support? Glad the arnica is working. He tried a few different types, but found that worked best. Its not a miracle cream but takes the edge off the stinging and redness! Good luck with your treatment, hope  the chemo is helping. keep in touch.